Ray’s Inspirational Journey With Epilepsy

When Ray was born, his parents had no reason to believe he had a problem. An ultrasound during pregnancy had shown a low amount of amniotic fluid. After 20 hours of labor, a C-section was performed. At first, doctors noted he was a bit pale and lethargic, but felt he was well enough to be sent home. They had no idea he had epilepsy.

epilepsy-unknown-with-baby-ray
Parents brought little Ray home.

During his first year of life, Ray appeared to be developing normally. At 18 months of age, Ray went to daycare; he was very lethargic and appeared to be unwell. When parents went to pick him up, he had his first seizure on the way home. When he had his first EEG test, doctors found abnormal activity in his brain.

epilepsy-ray-started-having-seizures

Seizures became a part of Ray’s life.

Medications were altered and dosages were changed, but seizures persisted.

After that, Ray had seizures periodically over the next year while his physicians tried to eliminate his convulsions with anticonvulsant medication. At this time Ray was diagnosed with epilepsy. This term is often used when seizures persist, as they did with Ray. After a year, seizures stopped for some time, but Ray continued to take anticonvulsant medication. After 2 years the seizures started again. Medications were altered and dosages were changed, but seizures persisted.

Since the medications were not stopping the seizures, and since they are not without risks and effects, parents were advised to consider brain surgery to improve Ray’s condition. However, there was no guarantee that surgery would work, and brain surgery comes with significant risks. Parents decided to consult a neurosurgeon and get expert advice.

Dr. Mihai Dimancescu reviewed Ray’s history. He stated, “There are risks to surgery, i.e., bleeding, infection, paralysis, loss of speech, and likely medications to follow for some years. Start Ray on a neurological program before considering surgery. It is a last resort. The IAHP program is designed to improve the brain around the abnormal areas.”  Parents decided against surgery.

At The Institutes Ray was given a comprehensive program that treated the brain as a whole.

When Ray was 6 years of age, his parents began looking for other answers that might solve Ray’s problems without medication or surgery. Ray’s parents met a family who were on the Intensive Treatment Program at The Institutes and they urged them to attend the “What To Do About Your Brain-Injured Child” Course, and to learn more.

A careful Oxygen Enrichment Program was an essential part of Ray’s program, since poor oxygenation can cause seizures.

After parents attended the course they brought Ray to The Institutes to be evaluated and to receive a detailed program to do at home. Ray was given a comprehensive program that treated the brain as a whole. Ray’s physiological program was the first priority. It was designed to provide the brain with the nutrients that the brain needs and to eliminate those elements that can be harmful or suppressive to brain function. Parents learned exactly what to feed Ray and what to avoid to ensure good function of the brain. A careful Oxygen Enrichment Program was an essential part of Ray’s program, since poor oxygenation can cause seizures from epilepsy. Parents began a physical program of crawling and creeping to improved neurological organization. Ray was already very intelligent, so he was also given a reading program to improve his reading speed, which would enhance comprehension and ensure that he really enjoyed what he read. The staff and parents wanted to make sure that Ray was intellectually above age level in all areas.

Ray’s overall condition greatly improved.

epilepsy-ray-given-program-helped
Ray learns about the inner workings of an airplane cockpit.

Medication has been reduced by half, and now Ray has been seizure-free for 16 months.

After five months on the program, his seizures stopped. With Ray improving day-by-day and his condition stabilized, The Institutes recommended a very careful and conservative reduction of the anticonvulsant medication Ray was taking. This reduction was begun, and now his medication has been reduced by half and Ray has been seizure-free for 16 months. Ray has also had perfect health during this time, without any illness whatsoever. His very healthy diet of fresh wholesome food and his daily physical program no doubt contributed to his excellent energy and overall well-being.

epilepsy-ray-given-nutritional-program

Gymnastics is an important part of Ray’s Physical Program

Now Ray’s reading is two years above his grade level.

Ray has now been on the program for nearly two years. Intellectually, he is superb. His reading level is two years above his grade level. He writes very well and often writes letters to friends and family.

epilepsy-ray-well-above-reading-level

Ray now loves to write.

Ray ran a 1 km race in 4 minutes and 43 seconds.

Running is a natural and effective way to improve brain function because it helps to oxygenate the brain. Ray does an aerobic running program of 5 kilometers daily, which he can complete in 42 minutes. His speed and stamina are excellent. He recently ran in a 1 km race, and completed it in 4 minutes and 43 seconds.

epilepsy-ray-riding-bike

Ray at the end of the race – showing off his Institutes t-shirt.

Ray has learned to ride a bike independently, and can now swim across a pool by himself. Brachiation has been another part of Ray’s daily program. He can do an impressive 10 trips of his brachiation ladder nonstop! Brachiation has greatly helped his vision and his manual competence, with the result that he now has better quality writing and a greater willingness to write.

epilepsy-ray-writing-better
Brachiation improves chest growth, vision, and manual competence for Ray.

epilepsy-ray-excellence-gymnastics-competition

Ray dazzled at a gymnastics competition – and made the podium.

Ray has come a long way since he started the program. A child whose life was punctuated by seizures is now thriving in every way.

Seizures are a symptom, not a life-long debilitating disease.

Seizures are a common symptom of an injured brain. Often they are unpredictable, dramatic, and frightening symptom. They can be a symptom of a mildly or moderately injured brain, as they are in Ray’s case, or a symptom of a severely or profoundly injured brain. But in all cases, seizures are a symptom, not a life-long debilitating disease.

When the brain matures and physiology improves, seizures decrease.

Ray’s program is aimed at brain maturation. When the brain matures and physiology improves, seizures decrease. Ray is now eight years old and is getting closer and closer to the finish line – brain maturation, not “seizure control,” is the goal. Ray’s parents were right to look for a more natural solution, and when they found it, they were willing to roll up their sleeves and do what was needed to help Ray achieve his potential.

epilepsy-ray-race-photograph-princess

After a recent race, Ray photographed with Princess Al-Mayassa bint Hamad bind Khalifa Al-Thani of Qatar, one of Time Magazine’s 100 most influential people in the world.

UPDATE

In a recent note Father writes: “Regarding Physical Education Ray brachiates sideways, backwards, twisting, and skipping rungs. He is biking independently and he walks-runs 6 km in 54 minutes. He must be one of the best in physical education, if not the best! Ray had a great semester at school and got all As and Bs except for in Physical Education, he got a C (for not following proper directions).  He was officially graduated to Grade 4.”

Congratulations to Ray on his graduation to 4th Grade and on the birth of his new baby brother. Now he will have the privilege of helping his brother to have an environment that is rich in stimulation and opportunity. There are lots of challenges ahead but Ray is ready, willing and able to meet them.

Learn more about seizures and what you can do